Stephanieann

Thanks for the tips! All my labs always come back normal. I get so frustrated because I want them to find something. I am taking a different b12 test tomorrow that's supposed to be more accurate, so we will see!

My Pots started in second pregnancy ( but I think I had it as a teen and also flared after my first pregnancy). Anyway, my neurological symptoms didn't start until after my c section. My pots also got worse. That was three months ago and since then, my neuropathy feelings spread all over my body. EMG normal. Haven't been officially diagnosed with SFN. A bunch of things I can test for yet but this progression seems awful quick to me?

I can't find much info about why pregnancy can cause pots. Maybe the reasons are the same as other causes. Just trying to get as much info as I can about what's happening in my body and there's doesn't seem to be much out there on the whole pregnancy aspect.

Thank you @dizzygirl. I'm hoping that is what it is and not a progressive neuropathy. I was taking klonopin and all this started worse when I stopped the med. But I don't know if that's the cause or was the klonopin masking issues? So many questions. Even an ambient didn't do much for my sleep last night. Should get some answers soon. Thank you for listening. Sometimes that's all you need

Thank you @angelloz. I am feeling a little better at the moment. I was able to eat at least and going to try some ambien my Dr prescribed to helpe sleep tonight. I have my first mental therapy appt tomorrow and making phone calls first thing in the morn. Hopefully it doesn't take too long to get in with these doctors.

So after a month of being released from the hospital and having much improvement and feeling almost normal, this weekend I am crashing down hard again. Starting to get an increase in what I think is small fiber neuropathy starting, ( burning, tingling, prickling) , electric zaps throughout my body. Not being able to sleep hardly at all, waking up with hot flashes, food not digesting, overactive bladder, and no appetite. And of course it's labor Day so my Dr isn't in office. How do we get through this without rushing to the er? I always feel like I need or want immediate care and the waiting is scary because I feel like something is attacking my body. I have found no cause for my pots as of now. It started during my pregnancy. I have a two month old and a six year old and luckily a very supportive husband. The thought of living in pain and not finding a cause and just getting worse is kinda throwing me over the edge. At least last time my pots crashed I wasn't feeling physical pain. ;( thank you for listening. I just hope I can get through this

So to add to my lovely Pots diagnosis, once my Pots symptoms started to crash (which led to my diagnosis) I started to get weird skin sensations. Pin pricks, creepie crawlies, random muscle twitching ( and it just twitches once, not like consistently like fasciculations) in my fingers and thighs. I feel it in legs, feet, hands, ears, face, pretty much all over and it's very random and doesn't happen every day. It's not painful because they are just quick pin pricks but its annoying more than anything. I mentioned it to my dr today and he said to wait and see because he thinks it could resolve. I have been under a huge amount of stress since my pots started so I almost think it's related to that since it's not following the typical neuropathy pattern since I feel it in my face and ears too. But what do I know, lol. I do not have a b12 deficiency. I do have low iron and vitamin d. All my other blood work has been fine. Anyone else with similar symptoms and found a cause? I feel so upset because my Pots is pretty much under control and I feel great but now i have these symptoms to worry over And i'm a great worrier, lol.

Yes, my pulse and blood pressure would both go up upon standing before I started meds. I also had tons of adrenaline surges and palpitations. My Dr didn't necessarily want to classify my pots as hyperadrenergic but I met most of the symptoms of it. I had consistent problems though since this all started in my last pregnancy. They didn't come and go. Although I suspect I've had issues with this since a teenager so I don't think it would be that unusual for symptoms to come and go.

Thanks @DizzyGirls, I was actually thinking of trying melatonin and asking my Dr if it's ok to take with my other meds. Hopefully that gives me some relief. I used to love to sleep but now I hate it, lol.

Thanks for the tips! I hope some of these work for me and eventually I'll stop being such a light sleeper. I long to sleep at least four hours without waking up!

Does anyone have any tips on what helps them sleep at night. Whether it's meds or just a certain routine? I do not sleep more than an hour to two hours at a time. I can usually fall right back asleep but it's so annoying to keep waking up and I also don't know if it's bad for my body and if I'm getting enough restorative sleep. I was on Klonopin short term and within two days I was back to sleeping bad again. I guess I'm too tolerant of meds, lol. Thanks!

I just started propranolol last week. I do love that it lowers my adrenaline rushes and keeps my heart rate in the 90s, sometimes less when standing. I am having so much more fatigue though, but who knows its the propranolol or the other million drugs I started. Beta blockers do cause fatigue and the other side effects you're experiencing. ..so much experimenting. Hopefully you can find a good fit for you.